The frail individual: uncovering the complexities in care and support across three common distinct settings.

Introduction By 2050, an estimated 2 billion people will be 65 years or older, bringing significant implications for health and social care. One implication – frailty – will affect patients, staff and healthcare settings. There is a need for improved recognition and care and support of frail individuals. Aims This thesis aims to uncover the complexities in the care and support of frail individuals across three distinct settings. A high-level study investigated the non-acute care setting, followed by investigating three distinct settings: community, acute hospital care and nursing homes. Methods A mixed-methods approach was used. Following a literature review, a survey (questionnaire) helped better understand ‘assessments for frailty’ used in the non-acute care setting. In the community setting, semi-structured interviews were undertaken with patients and healthcare professionals, using a participatory approach. In the acute care setting, a cross-sectional study of frail patients was conducted using patient data records. Regarding nursing homes, an online survey (questionnaire) helped investigate how frailty is assessed. Results Frailty is often understood and assessed as physical and mental health deficits. The perceptions of healthcare professionals and frail individuals regarding frail care and support networks overlap, but are distinct with different emphases. In acute care, variation in frail individuals’ living arrangement pre-admission and post-discharge was found, with a high proportion being discharged to a nursing home. Great variation in assessing for frailty was found in nursing homes. Conclusion Highlighted is the importance of family and friends in the care and support of frail individuals. Many hospital patients were discharged to settings with enhanced care and support availability, demonstrating the importance of care and support. ‘Assessing for frailty’ may require review to ensure holistic consideration of individuals and better frailty recognition. This may help improve the care and support of a frail individual and outcomes.Open Acces

Care and support networks of community-dwelling frail individuals in North West London: a comparison of patient and healthcare workers' perceptions

Background: Evidence suggests that successful assessment and care for frail individuals requires integrated and collaborative care and support across and within settings. Understanding the care and support networks of a frail individual could therefore prove useful in understanding need and designing support. This study explored the care and support networks of community-dwelling older people accessing a falls prevention service as a marker of likely frailty, by describing and comparing the individuals’ networks as perceived by themselves and as perceived by healthcare providers involved in their care. Methods: A convenience sample of 16 patients and 16 associated healthcare professionals were recruited from a community-based NHS ‘Falls Group’ programme within North-West London. Individual (i.e., one on one) semi-structured interviews were conducted to establish an individual’s perceived network. Principles of quantitative social network analysis (SNA) helped identify the structural characteristics of the networks; qualitative SNA and a thematic analysis aided data interpretation. Results: All reported care and support networks showed a high contribution level from family and friends and healthcare professionals. In patient-reported networks, ‘contribution level’ was often related to the ‘frequency’ and ‘helpfulness’ of interaction. In healthcare professional reported networks, the reported frequency of interaction as detailed in patient records was used to ascertain ‘contribution level’. Conclusion: This study emphasises the importance of the role of informal carers and friends along with healthcare professionals in the care of individuals living with frailty. There was congruence in the makeup of ‘patient’ and ‘provider’ reported networks, but more prominence of helper/carers in patients’ reports. These findings also highlight the multidisciplinary makeup of a care and support network, which could be targeted by healthcare professionals to support the care of frail individuals

Care and support networks of community-dwelling frail individuals in North West London: a comparison of patient and healthcare workers' perceptions

Background: Evidence suggests that successful assessment and care for frail individuals requires integrated and collaborative care and support across and within settings. Understanding the care and support networks of a frail individual could therefore prove useful in understanding need and designing support. This study explored the care and support networks of community-dwelling older people accessing a falls prevention service as a marker of likely frailty, by describing and comparing the individuals’ networks as perceived by themselves and as perceived by healthcare providers involved in their care. Methods: A convenience sample of 16 patients and 16 associated healthcare professionals were recruited from a community-based NHS ‘Falls Group’ programme within North-West London. Individual (i.e., one on one) semi-structured interviews were conducted to establish an individual’s perceived network. Principles of quantitative social network analysis (SNA) helped identify the structural characteristics of the networks; qualitative SNA and a thematic analysis aided data interpretation. Results: All reported care and support networks showed a high contribution level from family and friends and healthcare professionals. In patient-reported networks, ‘contribution level’ was often related to the ‘frequency’ and ‘helpfulness’ of interaction. In healthcare professional reported networks, the reported frequency of interaction as detailed in patient records was used to ascertain ‘contribution level’. Conclusion: This study emphasises the importance of the role of informal carers and friends along with healthcare professionals in the care of individuals living with frailty. There was congruence in the makeup of ‘patient’ and ‘provider’ reported networks, but more prominence of helper/carers in patients’ reports. These findings also highlight the multidisciplinary makeup of a care and support network, which could be targeted by healthcare professionals to support the care of frail individuals

What is current care for people with Long COVID in England? A qualitative interview study

Objective: To investigate current care for people with Long COVID in England. // Design: In-depth, semistructured interviews with people living with Long COVID and Long COVID healthcare professionals; data analysed using thematic analysis. // Setting: National Health Service England post-COVID-19 services in six clinics from November 2022 to July 2023. // Participants: 15 healthcare professionals and 21 people living with Long COVID currently attending or discharged (18 female; 3 male). // Results: Health professionals and people with lived experience highlighted the multifaceted nature of Long COVID, including its varied symptoms, its impact on people’s lives and the complexity involved in managing this condition. These impacts encompass physical, social, mental and environmental dimensions. People with Long COVID reported barriers in accessing primary care, as well as negative general practitioner consultations where they felt unheard or invalidated, though some positive interactions were also noted. Peer support or support systems proved highly valuable and beneficial for individuals, aiding their recovery and well-being. Post-COVID-19 services were viewed as spaces where overlooked voices found validation, offering more than medical expertise. Despite initial challenges, healthcare providers’ increasing expertise in diagnosing and treating Long COVID has helped refine care approaches for this condition. // Conclusion: Long COVID care in England is not uniform across all locations. Effective communication, specialised expertise and comprehensive support systems are crucial. A patient-centred approach considering the unique complexities of Long COVID, including physical, mental health, social and environmental aspects is needed. Sustained access to post-COVID-19 services is imperative, with success dependent on offering continuous rehabilitation beyond rapid recovery, acknowledging the condition’s enduring impacts and complexities

Using normalisation process theory to evaluate the implementation of a digital health intervention in community and secondary care long COVID clinics

OBJECTIVES: The potential and expected benefits of digital health interventions (DHI) have long been discussed, yet substantial challenges are associated with deploying DHI at scale. Insights are presented concerning the implementation of a DHI consisting of a patient-facing app and a digital dashboard for clinicians providing supported self-management for long COVID to support both clinicians and patients. DESIGN: Qualitative reflexive thematic analysis, mapped against Normalisation Process Theory. SETTING: Fifty-five and a half hours of zoom recordings of meetings between clinicians in community and secondary care long COVID clinics and members of the research team. PARTICIPANTS: Allied health professionals, service delivery managers and members of the core team, including representatives from industry partners. RESULTS: The DHI fitted with contextual circumstances and the design supported flexibility to suit circumstances in different trusts. The DHI also aligned with existing ways of working.Healthcare professionals worked together to support the implementation of the DHI, requiring flexibility to take account of local circumstances. The DHI was appraised in both positive and negative terms by healthcare professionals. Using DHIs was said to have the potential to complement care but not be a replacement for face-to-face clinical input. The DHI was judged to have demonstrated the potential to affect long-established patterns and organisational structures of engagement between healthcare professionals and patients in terms of access to care. CONCLUSIONS: NPT provided a framework for considering both individual agency and the organisation context, enabling reflections to be made at the level of the structure of services as well as people's experiences. The discipline of considering first the context, then the work and finally the practical effects helped place order on the 'mess' involved in the rapid cycle of developing, refining and implementing a DHI in an atypical environment (a pandemic)

Experiences of user-centred design with agile development for clinically supported self-management of Long Covid

The aim of the study reported here was to reflect and report on lessons learned from adapting HCI methods to fit into an agile development process delivering a digital intervention for people managing Long Covid. During the project, we maintained a record of all activities and interim design products. Subsequently, selected records were analysed qualitatively. Challenges included engaging patients managing this complex, debilitating health condition and fitting the digital intervention into different and evolving patient pathways provided by clinics. The key contributions of this paper are a description of the clinically supported self-management app, Living With Covid Recovery, and of adapted methods for user-centred design and testing; narratives on engaging diverse clinics integrating a digital health intervention in their care pathways; reflections on designing for diverse users; implications for design of future technologies for supported self-management; and insights into multidisciplinary working that are rarely discussed within HCI

Impact of fatigue as the primary determinant of functional limitations among patients with post-COVID-19 syndrome: a cross-sectional observational study

OBJECTIVES: To describe self-reported characteristics and symptoms of treatment-seeking patients with post-COVID-19 syndrome (PCS). To assess the impact of symptoms on health-related quality of life (HRQoL) and patients' ability to work and undertake activities of daily living. DESIGN: Cross-sectional single-arm service evaluation of real-time user data. SETTING: 31 post-COVID-19 clinics in the UK. PARTICIPANTS: 3754 adults diagnosed with PCS in primary or secondary care deemed suitable for rehabilitation. INTERVENTION: Patients using the Living With Covid Recovery digital health intervention registered between 30 November 2020 and 23 March 2022. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was the baseline Work and Social Adjustment Scale (WSAS). WSAS measures the functional limitations of the patient; scores of ≥20 indicate moderately severe limitations. Other symptoms explored included fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), depression (Patient Health Questionnaire-Eight Item Depression Scale), anxiety (Generalised Anxiety Disorder Scale, Seven-Item), breathlessness (Medical Research Council Dyspnoea Scale and Dyspnoea-12), cognitive impairment (Perceived Deficits Questionnaire, Five-Item Version) and HRQoL (EQ-5D). Symptoms and demographic characteristics associated with more severe functional limitations were identified using logistic regression analysis. RESULTS: 3541 (94%) patients were of working age (18-65); mean age (SD) 48 (12) years; 1282 (71%) were female and 89% were white. 51% reported losing ≥1 days from work in the previous 4 weeks; 20% reported being unable to work at all. Mean WSAS score at baseline was 21 (SD 10) with 53% scoring ≥20. Factors associated with WSAS scores of ≥20 were high levels of fatigue, depression and cognitive impairment. Fatigue was found to be the main symptom contributing to a high WSAS score. CONCLUSION: A high proportion of this PCS treatment-seeking population was of working age with over half reporting moderately severe or worse functional limitation. There were substantial impacts on ability to work and activities of daily living in people with PCS. Clinical care and rehabilitation should address the management of fatigue as the dominant symptom explaining variation in functionality

Global, regional, and national burden of disorders affecting the nervous system, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021

BACKGROUND: Disorders affecting the nervous system are diverse and include neurodevelopmental disorders, late-life neurodegeneration, and newly emergent conditions, such as cognitive impairment following COVID-19. Previous publications from the Global Burden of Disease, Injuries, and Risk Factor Study estimated the burden of 15 neurological conditions in 2015 and 2016, but these analyses did not include neurodevelopmental disorders, as defined by the International Classification of Diseases (ICD)-11, or a subset of cases of congenital, neonatal, and infectious conditions that cause neurological damage. Here, we estimate nervous system health loss caused by 37 unique conditions and their associated risk factors globally, regionally, and nationally from 1990 to 2021. METHODS: We estimated mortality, prevalence, years lived with disability (YLDs), years of life lost (YLLs), and disability-adjusted life-years (DALYs), with corresponding 95% uncertainty intervals (UIs), by age and sex in 204 countries and territories, from 1990 to 2021. We included morbidity and deaths due to neurological conditions, for which health loss is directly due to damage to the CNS or peripheral nervous system. We also isolated neurological health loss from conditions for which nervous system morbidity is a consequence, but not the primary feature, including a subset of congenital conditions (ie, chromosomal anomalies and congenital birth defects), neonatal conditions (ie, jaundice, preterm birth, and sepsis), infectious diseases (ie, COVID-19, cystic echinococcosis, malaria, syphilis, and Zika virus disease), and diabetic neuropathy. By conducting a sequela-level analysis of the health outcomes for these conditions, only cases where nervous system damage occurred were included, and YLDs were recalculated to isolate the non-fatal burden directly attributable to nervous system health loss. A comorbidity correction was used to calculate total prevalence of all conditions that affect the nervous system combined. FINDINGS: Globally, the 37 conditions affecting the nervous system were collectively ranked as the leading group cause of DALYs in 2021 (443 million, 95% UI 378–521), affecting 3·40 billion (3·20–3·62) individuals (43·1%, 40·5–45·9 of the global population); global DALY counts attributed to these conditions increased by 18·2% (8·7–26·7) between 1990 and 2021. Age-standardised rates of deaths per 100 000 people attributed to these conditions decreased from 1990 to 2021 by 33·6% (27·6–38·8), and age-standardised rates of DALYs attributed to these conditions decreased by 27·0% (21·5–32·4). Age-standardised prevalence was almost stable, with a change of 1·5% (0·7–2·4). The ten conditions with the highest age-standardised DALYs in 2021 were stroke, neonatal encephalopathy, migraine, Alzheimer's disease and other dementias, diabetic neuropathy, meningitis, epilepsy, neurological complications due to preterm birth, autism spectrum disorder, and nervous system cancer. INTERPRETATION: As the leading cause of overall disease burden in the world, with increasing global DALY counts, effective prevention, treatment, and rehabilitation strategies for disorders affecting the nervous system are needed

Global, regional, and national burden of disorders affecting the nervous system, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021

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Global burden and strength of evidence for 88 risk factors in 204 countries and 811 subnational locations, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021

Background: Understanding the health consequences associated with exposure to risk factors is necessary to inform public health policy and practice. To systematically quantify the contributions of risk factor exposures to specific health outcomes, the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2021 aims to provide comprehensive estimates of exposure levels, relative health risks, and attributable burden of disease for 88 risk factors in 204 countries and territories and 811 subnational locations, from 1990 to 2021. Methods: The GBD 2021 risk factor analysis used data from 54 561 total distinct sources to produce epidemiological estimates for 88 risk factors and their associated health outcomes for a total of 631 risk–outcome pairs. Pairs were included on the basis of data-driven determination of a risk–outcome association. Age-sex-location-year-specific estimates were generated at global, regional, and national levels. Our approach followed the comparative risk assessment framework predicated on a causal web of hierarchically organised, potentially combinative, modifiable risks. Relative risks (RRs) of a given outcome occurring as a function of risk factor exposure were estimated separately for each risk–outcome pair, and summary exposure values (SEVs), representing risk-weighted exposure prevalence, and theoretical minimum risk exposure levels (TMRELs) were estimated for each risk factor. These estimates were used to calculate the population attributable fraction (PAF; ie, the proportional change in health risk that would occur if exposure to a risk factor were reduced to the TMREL). The product of PAFs and disease burden associated with a given outcome, measured in disability-adjusted life-years (DALYs), yielded measures of attributable burden (ie, the proportion of total disease burden attributable to a particular risk factor or combination of risk factors). Adjustments for mediation were applied to account for relationships involving risk factors that act indirectly on outcomes via intermediate risks. Attributable burden estimates were stratified by Socio-demographic Index (SDI) quintile and presented as counts, age-standardised rates, and rankings. To complement estimates of RR and attributable burden, newly developed burden of proof risk function (BPRF) methods were applied to yield supplementary, conservative interpretations of risk–outcome associations based on the consistency of underlying evidence, accounting for unexplained heterogeneity between input data from different studies. Estimates reported represent the mean value across 500 draws from the estimate's distribution, with 95% uncertainty intervals (UIs) calculated as the 2·5th and 97·5th percentile values across the draws. Findings: Among the specific risk factors analysed for this study, particulate matter air pollution was the leading contributor to the global disease burden in 2021, contributing 8·0% (95% UI 6·7–9·4) of total DALYs, followed by high systolic blood pressure (SBP; 7·8% [6·4–9·2]), smoking (5·7% [4·7–6·8]), low birthweight and short gestation (5·6% [4·8–6·3]), and high fasting plasma glucose (FPG; 5·4% [4·8–6·0]). For younger demographics (ie, those aged 0–4 years and 5–14 years), risks such as low birthweight and short gestation and unsafe water, sanitation, and handwashing (WaSH) were among the leading risk factors, while for older age groups, metabolic risks such as high SBP, high body-mass index (BMI), high FPG, and high LDL cholesterol had a greater impact. From 2000 to 2021, there was an observable shift in global health challenges, marked by a decline in the number of all-age DALYs broadly attributable to behavioural risks (decrease of 20·7% [13·9–27·7]) and environmental and occupational risks (decrease of 22·0% [15·5–28·8]), coupled with a 49·4% (42·3–56·9) increase in DALYs attributable to metabolic risks, all reflecting ageing populations and changing lifestyles on a global scale. Age-standardised global DALY rates attributable to high BMI and high FPG rose considerably (15·7% [9·9–21·7] for high BMI and 7·9% [3·3–12·9] for high FPG) over this period, with exposure to these risks increasing annually at rates of 1·8% (1·6–1·9) for high BMI and 1·3% (1·1–1·5) for high FPG. By contrast, the global risk-attributable burden and exposure to many other risk factors declined, notably for risks such as child growth failure and unsafe water source, with age-standardised attributable DALYs decreasing by 71·5% (64·4–78·8) for child growth failure and 66·3% (60·2–72·0) for unsafe water source. We separated risk factors into three groups according to trajectory over time: those with a decreasing attributable burden, due largely to declining risk exposure (eg, diet high in trans-fat and household air pollution) but also to proportionally smaller child and youth populations (eg, child and maternal malnutrition); those for which the burden increased moderately in spite of declining risk exposure, due largely to population ageing (eg, smoking); and those for which the burden increased considerably due to both increasing risk exposure and population ageing (eg, ambient particulate matter air pollution, high BMI, high FPG, and high SBP). Interpretation: Substantial progress has been made in reducing the global disease burden attributable to a range of risk factors, particularly those related to maternal and child health, WaSH, and household air pollution. Maintaining efforts to minimise the impact of these risk factors, especially in low SDI locations, is necessary to sustain progress. Successes in moderating the smoking-related burden by reducing risk exposure highlight the need to advance policies that reduce exposure to other leading risk factors such as ambient particulate matter air pollution and high SBP. Troubling increases in high FPG, high BMI, and other risk factors related to obesity and metabolic syndrome indicate an urgent need to identify and implement interventions